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Six Month Nerves...

jmjsmomma

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jmjsmomma Apprentice
jmjsmomma
Posted

This month marks six months since my son's Celiac diagnosis. He seems to be doing very well. His distended belly is gone, his belly aches are (almost) gone, his leg pains have decreased significantly. He went in to his GI for a repeat Celiac panel yesterday. His tTg in January were "more than 100", the scope that followed showed a torn up little intestine.

I know this has been asked before, but shouldn't he have started gaining weight by now? He has grown almost 3/4 inch and FINALLY hit 40 inches in April but he still is just 38lbs, only one pound more than where he was pre-dx. He is still in a toddler size 9 shoe too and has been forever. He will be six in August and starting kindergarten....he is SO TINY compared to his peers, it breaks my heart. I know our GI said it could take a year for his body to recover enough to see any signifcant growth/weight gain, but I had foolishly pinned some hope on seeing something by now. It is so sad to see his 4 year old brother shoot up past him. He does still also complain of random stomach/joint pain when I know that he has not been glutened.

He does great on the Gluten-Free diet. Eats very, very well and our home is Gluten-Free as well. He did get glutened last month and suffered for ten full days from it, so I know how he reacts now when glutened.

Any thoughts/experiences?

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hinoko Newbie
hinoko
Posted

When I was told to go on a gluten free diet, I spoke with a cousin of mine who had Celiac. She warned me that, in her experience, symptoms from a glutening can last weeks. She said that she could tell right away because she would have stomach pains and diarrhea, but that her fatigue and muscle pain symptoms would hit a few week later.

I haven't been gluten free long enough yet to really have a handle on my own glutening symptoms, but I would say that this has been a roughly similar guideline for me. Once, when i know that I was glutened, I had immediate stomach problems, followed by a week of headaches, a week of muscle pain, and a week of fatigue. Three weeks for one little piece of gluten hidding in my food :angry:

The Kids Folks Apprentice
The Kids Folks
Posted

Hang in there Mom- the growth does and will happen, although not as fast as any of us mom's would like to see. DS age 8 has been gluten-free since Oct, he has finally grown 2 inches, but his weight on the scale seems to remain the same. This is a wierd thing as he has gone up a size in clothing, from a 5 slim to a reg 6. Woo Hoo. We talked to the peds about it and b/c his digestive issue was chronic C - she felt that he weight was never a true weight. His weight included his constipation if that makes sense!

DS was under the 3rd percentile and is now at a strong 5th!! It takes time but it will happen. His appetitite will increase and when it does watch out! DS ate 4 McDonald's cheeseburgers the other night (without the bun of course) and about 3/4 of a box of supersized fries. Less than 2 hours later he was hungry and ate a bowl of Trader Joes gluten-free mac and cheese and an apple with peanut butter (which by the way my kids LOVE!!)

I've tried to think of his growth like a plant - you can't grow roots and leaves at the same time. I think DS growths height at one time and weight at another.

Like another mom said to on this site, be thankful for the positive changes that you are seeing, the rest will all come in time.

Hugs to you! It will happen - just try and be patient (which I know is a really really hard thing!! :rolleyes: )

The Kids Folks

mmmomx2 Rookie
mmmomx2
Posted

I feel for you. My little guy is 5, 40 inches and only 32 pounds. We've been on the diet for only a week, so I can't offer any experience, but my husband keeps expecting to see changes already when Max and I are still just going through withdrawals. Mine starts kindergarten in August as well, and it is hard to see the other boys so much bigger, but at least the girls, even at this age, see the small and cute factor ;)

lizajane Rookie
lizajane
Posted

while my son is not abnormally small, he is smaller than his peers and WAY smaller than his brother. so i can't offer you answers, but i do commiserate. dylan is 4 and he is one inch shorter than his brother was at age 3. i measured him just about the time he went gluten free and i am already dying to measure him again even though it has been only a month. (so i am sure nothing has happened!) he wasn't even officially diagnosed with celiac. i was, and with all my research, i learned he had many tell tale signs. he was a new man within three days of going gluten free. so i hear ya, momma. hang in there.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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